Upper Nyack, N.Y. based online non-profit organization CreakyJoints, with a support community of more than 80,000 patients and their families in all 50 U.S. states, Canada, Western Europe, South America and Australia, has teamed up with rheumatology researchers at the University of Alabama at Birmingham to launch Arthritis Power, the first ever patient-led, patient-generated, patient-centered research registry for arthritis, bone, and inflammatory skin conditions.
Focusing on rheumatoid arthritis, psoriasis, psoriatic arthritis as well as numerous other musculoskeletal conditions, Arthritis Power’s goal is to collect health data securely from tens of thousands of arthritis patients in support of ongoing research.
Arthritis Power puts the patient’s health information in their hands, allowing them to track symptoms, treatments, medications, and health data will be collected using any smartphone (iPhone or Android), laptop, desktop, or tablet with an Internet connection. This will help individuals better understand changes in their condition, and enable them to work with their doctor to make treatment decisions. Using a dedicated app, patients will have a quick way to see whether their symptoms are changing or holding steady over time, monitor you they are responding to new medications or other changes in treatment, and view reports in daily, weekly, or monthly snapshots depending on the tracking frequency desired.
Arthritis Power app users will be able to access customized reports summarizing all the information they’ve logged, including medications, symptom tracking, and other health data. They will also be able to email secure reports to themselves or to their doctor during or between appointments, as well as to share how they have been doing with loved ones to help them better understand the condition and its symptoms.
Participation in Arthritis Power will help speed the arrival of personalized medicine by facilitating researchers’ better understanding of how different treatments work for different people. The information provided will be overseen by patients in a secure process that allows only trusted experts to access personal information in studies that promote scientific knowledge of how to best treat and, eventually, cure conditions of the bones, joints, and skin.
Arthritis Power is guided by a patient-led steering committee of called the Patient Governor Group that identifies where research for study development is needed and prioritizes research requests from the CreakyJoints patient community worldwide. Arthritis Power is supported in part by the Patient Centered Outcomes Research Institute (PCORI), a nonprofit, nongovernmental organization. Congress authorized establishment of PCORI in the Patient Protection and Affordable Care Act of 2010, with a mandate to improve the quality and relevance of evidence available to help patients, caregivers, clinicians, employers, insurers, and policy makers make informed health decisions. Specifically, PCORI funds comparative clinical effectiveness research, or CER, as well as support work that will improve the methods used to conduct such studies.
Usually persons with rheumatoid, psoriatic arthritis or other chronic conditions learn about opportunities to participate in research from their health care providers, but Arthritis Power will be offering a variety of clinical trial and other research opportunities, allowing patients to proactively decide whether, when, and how to participate. Data securely submitted will be used by patients, universities, research facilities, and physicians to better understand how to fight these diseases and potentially contribute to discovery of elusive cures.
“Patient-centered research means that we can more effectively use big data to answer questions that are important to those living with these illnesses. This opportunity will produce results that help patients weigh the value of healthcare options according to their personal circumstances, conditions, and preferences, says Jeffrey Curtis, MD MS MPH, William J. Koopman Endowed Professor in Rheumatology and Immunology at the University of Alabama at Birmingham, Division of Clinical Immunology and Rheumatology. “The more people who join and share information about their symptoms and treatments, the more quickly we are able to find answers.”
Putting Power In Patients Hands
Arthritis Power empowers patients to take control of their disease, first by allowing them to positively support and advance understanding of arthritis by participating in studies shaped by their peers. Secondly, patients can conveniently and easily track changes in their symptoms over time with their healthcare team via the My Reports function of the Arthritis Power application. This close-up view of a patient’s day-to-day experience will help doctors work with their patients to adjust medications and promote healthy behaviors.
“With the launch of Arthritis Power, we now have the ability to prioritize our community’s most urgent treatment and disease management questions,” says Seth Ginsberg, President and Co-Founder of CreakyJoints and the Global Healthy Living Foundation. “It will be easy to track, share, and send health data, enabling patients and physicians to have more productive and meaningful dialogue about ongoing treatments.”
The Arthritis Power Research Network invites patients living with rheumatoid arthritis, psoriasis, psoriatic arthritis, ankylosing spondylitis, fibromyalgia, osteoarthritis, lupus, and other bone, muscle, skin or joint conditions, to learn more about and join (for free) Arthritis Power at http://www.ArthritisPower.org.
CreakyJoints, part of the not-for-profit Global Healthy Living Foundation, is an education, support, advocacy and patient-centered research organization for people with all forms of arthritis and rheumatic disease. Co-founded in 1999 by arthritis patient Seth Ginsberg. The Global Healthy Living Foundation is a 501(c)(3) non-profit advocacy organization, based in New York, its mission to improve the quality of life for people with chronic illness. Co-founded in 1999 by arthritis patient and advocate Seth Ginsberg (diagnosed with Spondyloarthropathy at age 13), the GHLF includes disease-specific communities, the most visible being CreakyJoints. More information about CreakyJoints can be found at:
University of Alabama at Birmingham
University of Alabama at Birmingham